Monday, April 26, 2021

64 weeks

Dear Sonzee, 

The immediate words that want to write themselves onto this page are it's been another week.  Yet, for this week I want to start with, How has it been so long? How does it keep getting longer? How does time on the clock continue to move on creating the absence of seconds, minutes, hours, days, weeks, months, and eventually years? How is the world still spinning without you here?

Some moments almost feel normal now.  Scrolling through Facebook seeing your CDKL5 siblings and schoolmates who are still here brings me a momentary pause as I swallow the fact that it isn't my life anymore. I am a stranger to that world now.  I can't relate to that group except to tell a story where it starts with, "I once had a medically complex child".  To be honest I can count the number of times I have said that in the last year, I apologize for that.  It is a mixture of a lack of energy and it is just really hard to bring you up.  

Last week I was out and someone, a stranger asked me about my necklaces.  I paused for a moment too long, sighed a deep breath, and said, "well this is going to get awkward".  I mentioned that I had a daughter but she passed away, and naturally her reply was "oh I am so sorry".  My mouth said "it's ok", but my mind screamed, "no it's not but don't say anything aloud, just swallow it down and don't talk anymore".  She continued to talk.  Some days I yearn to be asked about you, some days I beg for the conversation to continue.  It wasn't one of those days.  It was a day I just wanted to go about my day and not have to explain that I walk around with a fingerprint of my dead 4-year-old and her birthstone around my neck along with a hummingbird and a quote, and one of my favorite pictures of you etched into silver.  

Later that day I went off to Bear Pines by myself. I almost feel bad I left aba to deal with your 2 sick sisters, but truly I needed a mental health escape, and they were coming up for the weekend anyway.  While I was driving I started to think of titles of books I have never written related to you.  It took me only a few hours to figure out that it was time to begin to fulfill a childhood dream of mine to become an author and have you be the muse. We will see where it goes and how long it takes.

The weather at Bear Pines was perfect. It was windy and chilly, but not too cold.  Your wind chimes didn't stop singing.  I am waiting for the leaves to start to grow back on the trees in front of the house.  I finally hung 2 more sets of rope lights in the backyard and we folded the hockey rink tarp in a better way for storage and took down the broken ninja course.  We are starting to have more renters booked, which is exciting and nerve-wracking at the same time for me. It makes me smile that you inspired an amazing place for families to be able to escape to together and relax, I just sometimes wish that I could've had you and Bear Pines.

Anyway, my love, if you could send the powers of health to our house that would be great.  Noam has been down for the count for the last 2 days now, and aba, Tzvi, and I would like to stay spared.

I hope you are staying healthy and happy.

Until next time.

Love always, 
Ema

The Mighty Contributor

Tuesday, April 20, 2021

63 weeks and 1 day

Dear Sonzee, 

Another week.  Another 8 days to add to the time I haven't been able to hold you or give you a kiss.  Another 192 hours.  When I thought about what I was going to originally write for the 63-week post I anticipated being in Florida pretending life was vastly different than what it has turned out to be. I thought about the figurative reset button being pushed and how when I left in the middle of the week I would be refreshed and ready to go back to normal.  Instead, the reality and my plan (as usual) were on different pages and I am writing to you while sitting on the blanket that we received a year ago at our orientation for grief group, that I placed on top of your hot black granite bench so my butt doesn't burn.

The plus side is that on a good day your absence feels like I have forgotten something (really important), being out of state only adds to that, so it is at least a bit better from that perspective that I am here.  On the reality side of it all, I am really still completely disappointed and saddened that I didn't get my much-anticipated break and bonding with Elle.  It has made me realize that there really is no escaping this new normal.  There really is no way to escape or reset anything.  Your absence just follows me all around and the sadness while shelved for little bits of time can't actually ever vanish.  Not even with the best of intentions.  (PS: It really really sucks!)

I feel like I will be in some forever funk.  I am trying to distract myself, but I keep failing.  Maybe the point in all of this is to realize I just have to give in to it all and deal with it, whatever that even means.  Maybe I just need to accept the reality?  I never could accept your CDKL5 diagnosis, so I am holding out very little hope that I will miraculously figure out a way to accept your death.

Aba and I can't seem to allow any of your siblings to claim your room, so it still is yours.  We have however finally given in to giving Laeya and Meena their own rooms by moving Laeya into what was formerly known as the guest room.  Funny enough, that room and its ADA-compliant bathroom were intended for you, but we realized quickly after creating the plans and living with your seizures that running across the house all night long wasn't going to work and so what became your room was created.  I think it will be perfect when they are both set up, but I am a little blah about the change.  I just liked that we had this extra room for guests (although we all know it has hardly been occupied).

We are going to Bear Pines again this weekend.  Trying to get all the weekends we can before all of the bookings and our summer in NY.  The end of the school year is sneaking up on me and before I know it, it is going to be June and we will be on our way to our first summer in VV without you.  It is going to be a challenge, I won't even pretend it won't be, but for now, I am doing what I do best and putting off any of those thoughts that might provoke my anxiety more than it already is.

I hope you were able to meet Brucie as she crossed over the rainbow bridge.  I hope you guys are back to snuggling and that she makes you miss homeless than you might have been.  I hope you are a comfort to her as well.  Bianca has taken up her space in bed and still goes into your room and lays on your bed on all the clothing I have yet to send out to get made into a quilt.  We did have one quilt made, but so many people offered to make and we have so much of your clothing that I am having one made for each of us along with pillows.  

Anyway my love.  

Until next time.

Love and miss you always!!!

Be healthy and happy!

Love always, 
Ema

The Mighty Contributor

Monday, April 19, 2021

Escape

Sometimes things don't go as planned, well, let's be honest, sometimes life doesn't go as planned.  There is that Woody Allen quote saying if you want to make G-d laugh, tell him your plans. For me, I would say that is the theme of the last 6 years of my life.  I am sure to G-d there is a reason, it probably makes perfect sense to him, but for me, I feel like I am left unsuccessfully trying to sort out the pieces of a million-piece puzzle while he sits back with a large cup of coffee feet kicked up on a table and laughing as I attempt to make the pieces fit together.

The last 14.5 months in our house have been tough. I know it is similar for many, but really the loss of Sonzee made the COVID19 isolation component a walk in the park for me because nothing is worse than grieving your child.  In some ways, it was a huge benefit, a great excuse to hide away and not have to face any sort of reality.  Buying Bear Pines was one of those let's try and change something up consolations.  A false trick that seems to occur in the minds of many bereaved parents.  The ridiculous thought that purchasing a couch, a house, or going on a vacation will make us somehow feel better over the loss of our kid.  My mind has even gone as far as tricking me into thinking a change of scenery or tackling various projects will also somehow cushion the reality. 14.5 months in and an unplanned schedule change makes the obvious even more obvious.  There is no escaping reality and there simply is no escaping grief.  No amount of physical distance can actually distance the looming reality of grief.

Grief is that unwanted passenger in your I want to have a moment of silence in the car. Grief is the replacement of the 1000 item to-do list related to the person who isn't around. Grief is the voice in the back of your mind reminding you of a person impossible to forget, but yet, somehow, that fear is one in the forefront of your thoughts.  Grief is the reality that despite the attempt to change your location or surround yourself by your life from the past in an attempt to pause the present, sometimes life just doesn't go as you planned.  Sometimes your attempt to run away is derailed and you're forced to stare your reality in the face, and maybe, just maybe, G-d isn't sitting there laughing while he is holding his cup of coffee.  Maybe he is actually sitting there nodding his head as you figure out that the entire purpose is the realization that your feelings of derailment from your plan is just simply the way to get you back on track to what is actually the real plan.

The Mighty Contributor

Monday, April 12, 2021

62 weeks


Dear Sonzee, 

Another week has gone by,  Today marks 12 days into the month of April.  I have to ask why time seems to be picking up pace?  I am left to wonder if it felt this fast when you were alive because I feel like I can't remember.  They say grief can affect your memory, I sometimes have a challenge placing the blame on grief, but it is either that or early-onset dementia, and for now, grief seems to be a lesser evil of the two.  The thought of experiencing memory loss that would erase what few years I had with you makes me panic, so despite it being so awful, grief it is.

We finally got up to Bear Pines over the weekend.  It was beyond beautiful weather, still cold, and required warm blankets in the morning to sit outside. We took down the ice rink that turned out to be quite a failure but also a learning experience.  We are unsure the tarp is going to be usable next winter, but we shall see.  We uncovered the trampoline and got the net and everything all set up.  Everyone was jumping all weekend, even ema, that was probably funny if you saw me trying to do tricks.  Sadly the ninja course also met its demise since we never got it down before the snow began to fall, oops. Live and learn they say, and considering it was aba and my first home ownership during a real winter I have to say we did well overall.  The leaves on the trees are still absent in the front of the house, but the birds and squirrels were out and about more than the last time we were there, and as always the weekend was just what I needed.  We hung your wind chime in the backyard and now it feels like you are fully surrounding us there with the other wind chime on the porch.  

Yesterday was Laeya's first friend's bat-mitzvah.  Talk about feeling aged.  Her parents were the first friends' aba and I made in Phoenix.  I met this little girl as a brand new baby before we even knew we were pregnant with Laeya, and I still see her as this little baby, not the grown-up beautiful 12-year-old girl she has become.  I watched Laeya from a bench on the side take her first photo booth picture with 2 other friends and wanted to cry thinking about how in 9 months we will be celebrating her (without you there).  I sent the picture to Miss Jenn and all I could see when I looked at it was her and me circa 1996/1997 and it's just insane.  I can't lie, looking 9 months into the future, I feel like it is going to be a challenge to celebrate your sister while also honoring your absence, I am not looking forward to the struggle, but maybe beginning the planning so far in advance might soften the blow?

This week I am going on my first solo vacation in almost 2 years.  I have gone away very little since becoming a mom, but every time Elle or I have a baby you know that we travel to each other.  The last time I flew to her, you accompanied me.  It was the day after that trip that you and I took up residence at PCH for close to a month because we learned just how severe your GI issues really were.  I am so excited to be going on this trip, but in the back of my mind, I am panicking over how I am going to handle all of the emotions during it.  I guess that is just going to be a recurring theme in my life from now, happiness tinged with panic, sadness, and a hell of a lot of missing you and wishing things were just different.  

Anyway my love.  Be well. Be safe.  Be happy.

Until next time.

Love always, 
Ema 

The Mighty Contributor

Thursday, April 8, 2021

1 year 2 months



**Should have been written on April 3, 2021.**

Dear Sonzee, 

I am sorry I didn't write my monthly letter to you on the actual 3rd of this month.  It is hard to believe I am only 5 days behind because it feels like it has been so much longer.  Another month.  Another month has passed without your physical presence.  Another month further away from the close to 60 months you spent with us. How was it you didn't even spend 60 months with us? This last month has been a tough one. I am unsure why exactly that is, besides the fact that it is obvious you aren't coming back, but I knew that the moment you left.

This month I just felt an overwhelming sense of sadness. It happens on this journey.  The emotions definitely ebb and flow.  There have been split-second moments since you've been gone that an overwhelming sense of happiness overcomes me related to your siblings, but it just as quickly gets wiped away with the slap in the face that you aren't here.  Like when your brother won his state championship, what an amazing moment.  I have no doubt you watched and were somehow involved in assisting his team pull off that nail-biting final moment that gave them that well-deserved win. But, you weren't sitting there with us in your supportive sister hockey gear kicking your boots off 100 times.  We didn't have to take the elevator upstairs or find a seat close to the glass for you to watch. There was no parking in the handicap parking spot or the potential of being frustrated that they were all taken. There is just so much that still hurts about how life has changed.  There isn't one potential positive outlook that doesn't yield a reminder of how horrible it is that you aren't here, well except that you are not suffering (at least I hope you are not). 

I find myself wishing my brain and heart would just agree already on this situation.  After 14 months you would think it would have happened, but it hasn't and I am unsure it ever will.  My heart is forever altered by your death, and my brain rocks back and forth between your death being in your best interest and how could it even logically make sense that I had to bury a child regardless of the situation?! I guess I am just left waiting until the day it will all be revealed?!

This month has brought the fear of the "what-ifs" of death. Like, what if when I die we aren't reunited, or what if when I die I find out you have just been alone in some heavenly hospital with all of your same challenges but no one is taking care of you.  What if you aren't happy or are still suffering?  These are really scary, panic-inducing, painful thoughts, so I try to keep them buried deep or they fly at me like that sticky black goo stuff that weighs everything down that was in the Incredibles movie.  I have to deep breathe my way out of those times and remind myself that none of that can be true. But, I can admit it is really hard to win that inner battle.

I hope wherever you are it is better than my happiest dreams and nothing at all like my worst fears.  I hope you have found your forever peace and are surrounded by a plethora of love and smiles.  I hope you have a "step-in" ema or at least someone who is holding down the fort in that position for me until the day our souls meet again.

But until then my love, as always, know I love and miss you. Wishing you another month of health, happiness, and safety.

Until next time. 

Love always, 
Ema

The Mighty Contributor

Monday, April 5, 2021

61 weeks

Dear Sonzee, 

I am sorry I feel like I am so behind on my letters to you.  These multiple-day holidays can throw me completely off.  I at least was able to deliver your 1 year 2 months rock to you on Friday, but your 14-month letter is sadly still not completed. 

This weekend marked the completion of our second Passover without you.  I made it through yizkor.  It is really comical to me how sometimes the anticipation I feel regarding events or moments results in varied outcomes.  There are times when I am so worried and panicked I feel physically sick and it turns out that the fear was accurately foreshadowed, but then there are other times where afterward I can sigh in relief.  Yizkor turned out to be the latter.  That might be attributed to my impeccable timing of arrival to being within 5 minutes of it starting, standing in the back of the room, and purposely making close to zero eye contact with anyone.  I felt as if there were looks in my direction but focusing my eyes inside the yizkor pamphlet made it so it only existed in my imagination vs if it were reality.  Thankfully small talk afterward was limited and so the day just went on.

Meena had a sleepover after the holiday ended.  I should have known that despite sailing through what I anticipated to be one of the potentially hardest things I would have to do, I would get taken down by a song played in a Hannah Montana movie.  Do you remember your slide show for your first birthday?  Do you remember the song "The Climb" by Mylie Cyrus?  Well, it apparently is in that movie and my childish interest in a Disney movie turned out to stab me straight in the heart.  It was at the part she sang the very first line that I lost it standing behind the couch.  Meena saw me, as she turned around to ask me why I chose this song for your slide show.  I had my hands on the corners of my eyes and was simultaneously turning around to disappear.  Aba took over answering, or maybe he said he didn't know. I am really not sure because I was just concentrating on not losing all my marbles in front of her little friend and making it into the bathroom to completely fall apart.  Aba came to check on me but I sent him back to Laeya because I have had to hold her for hours after that song came on her Alexa without warning.  She also went down.  

Sometimes life itself just doesn't make sense.  I feel like since last night my emotions are on edge. I can feel it in the ever-present lump in my throat and the inability to get the tears from popping into my eyes as quickly as they are. I foresee a tough week ahead.  In the last 61 weeks, I have learned when it gets to this point it is only downhill and then it can take weeks to get back to whatever my new tolerable baseline actually is.  In short, it sucks, it will continue to suck, and maybe the suck will change a little, but overall, your absence just sucks.

This weekend we are going to sneak away to Bear Pines, and I have to say it is much needed.  I almost detoured driving on the 101 last Friday to the I-17 to go hide away by myself, but with it being the last days of Passover I decided it was probably best to stick around in Phoenix.  I am counting down the days until I can get up to the trees and hang a new wind chime that Miss Cori sent to us in honor of you a few months ago.  It is so perfect, but since its home is going to be in the backyard of Bear Pines, it needs to be hung.  She had the quote that we put on your gravestone engraved into the clear bottom portion. It brings a combo of tears and a smile to even write about it.  I am looking forward to getting lost in its sounds with my red mug of coffee and some great company.

Anyway my love. I miss you! I will write to you sooner rather than later!

Until next time. 

Love always, 
Ema


The Mighty Contributor